TTC/Pregnancy on Prednisolone or similar part 4

[digitalgirl]

A positive thread for all those diagnosed with High or Very High NK Cells and looking to start TTC or already pregnant on Prednisolone and/or Intralipid treatment.

Newcomers very much welcome!

Part 3 here

Part 2 here

Part 1 here

I was hoping to make it this Saturday but just had a family thing moved to that day so will have to duck out. I wanted to bequeath some PG tests to the TTC'ers...so maybe will post them to PQ.

Hi Ladies - I wonder if I may join you all. You also gave me some fab advice re: taking the Prednisolone on the off chance we had got lucky last month.

Well your advice was well heeded as I did in fact get a BFP. But rather nervously announcing it on here - but seems we're all in the same boat so to speak.

Bit of background as intro: I had one mc back in Oct '07 and then carried to term my 3 year old. Decided to try for no. 2 and had 3 mc's last year all at 7-9 weeks. Neg on GP test results and lost faith in the GP's so decided self refer to Mr S who I think most of you are seeing and got tested - v high NKC with 1.98 activation. So on very high plan. However, didn't think I was pg so stopped the 25mg after 9 days and then missed period re-tested and postive - eek. Immediately upped to 40mg. Had first intralipid last week and due for scan at 6+5 next week. Petrified as this was when the last one died although did not realise this until started mc at 8 weeks but required an ERPC.

Sorry for long post!

Welcome mercator, sorry for your losses but you're in with a good crowd here. Whispered congr....... to you for your BFP, and there are others who did the same as you I believe, stopped the pred only to find out a few days later that they were indeed pregnant and restarted the pred, with no ill effect. Feel free to mental here, we all know exactly what you're feeling as we've all been there in one way or another!

Incidentally maybe I'm just too curious, but I'd be interested to hear the stories behind everyone's nicknames ... mercator is an interesting one?? Maybe I'm just a nosy git, I dunno :)

PS merc feel free to add yourself to the ever-expanding and somehow strangely comforting List, if you like?

Hi Mercator - I did exactly what you did with the pred! I stopped around 11dpo and didn't test for about another week when I got a strong BFP. I really had no idea. Apparently the pred stays in your system so is still working from when you previously took it. I am now 10 weeks and everything looks good (fingers crossed)! You are doing everything you can now and good luck:) Keep us updated how you are going.

Welcome back and quiet "yay!" on the BFP to mercator.

I've always wondered the same ari, about where people's names came from. I carried mine over from Babycentre where I was posting during my second, or maybe third pregnancy I think. It basically summed up my scared and panicky frame of mind. I was on some other forums to do with vintage interests and my nickname was also to do with kittens so on all of the forums I have been on, I have ended up being called kittens. My OH also calls me kittens.

snoopy, that's strange that you have to have a month off. Imagine if you hadn't taken a test as early as you had, you'd have been none the wiser and continued as normal.

Sadly, I am another one who scrolls back, reads all the posts and then by the time it comes to post I can't remember what's happened with whom! Can you all slow down a bit please?!

free, in answer to your question about what aspect of RMC having foam squirted into your womb covers, it is to see if there is any damage caused by repeat ERPCs etc that is making is so hard to get pregnant.

Well, my day has been f*ing marvellous I must say! As I suspected, I have scarring in my womb from all the bloody ERPCs, the consultant who scanned me said he thought it was most likely from my second termination after which they left me a souvenir which had to be removed by a subsequent ERPC. I am so cross! I went to my GP about back on 1 August with tales of mid cycle cramping and light periods after 7 separate uterine interventions of one sort or another, with alarm bells ringing that Asherman's could the the cause. The GP I saw was not my usual one as he was on holiday. He sent me for Day 21 blood tests and gave me some fob off that he would refer me to UCH but that they may not give me an appointment, implying that I'd used up all my NHS budget allowance with all the RMC testing I'd had there. It was a bit fat lie anyway because he didn't even refer me and there is nothing in my doctors notes about it at all. I went back to my usual GP, who is usually more than helpful (although I can't help thinking this has changed since GPs took charge of their own PCT budgets), to talk to him about the results of my Day 21 blood tests. Whilst I was there I asked him about the Asherman's thing and he dismissed me out of hand and pretty much made me feel like I was being a hypochondriac. He told me there was no indication of Asherman's and that there was very little chance I had it. Incidentally, he also told me that my test results indicated I was ovulating normally, which Mr Shehata pretty much said the opposite to. If they hadn't have dismissed my suspicions I could've been diagnosed and treated for this by now. As I don't have much time given my age it would be advisable to get it done ASAP, especially as I think you probably need some healing time before TTC. So, I need to have another scan at £150 and then £1300 for a hysteroscopy (after the £450 scan I just had). And that's before any of the other TTC costs, probable Superovulation as I've also just found out my AMH test results are 10.54, which is in the middle of the "low fertility" range.

So, I started on the thread for traumatised people who have had to terminate due to abnormalities, then the "recurrent buns" repeat miscarriers thread, now the pred thread (thanks to my GP I have been feeling like shit on steroids for 9 months for no bloody reason!), moving swiftly onto the Asherman's support thread, eventually to the Superovulation thread, probably the infertility board and one day to a "when do you decide enough is enough" thread. Grumpy doesn't really cover it!

When you have an ERPC, and you sign the waiver bit that says you understand the possible, but (apparently) unlikely risks involved in the procedure, what they fail to mention is that if you are affected they will wash their hands of you and refuse to acknowledge your suspicions should there be any repercussions and you will be forced to go and mop up their mess with wads and wads of £50 notes .

Welcome mercator and sending all possible positive thoughts your way x

kittens are you with st marys? I don't understand why you wouldn't get an hysteroscopy on the nhs where they could fix the scarring? Why should u have to pay?

hi free,
i am with the miscarriage clinic at st heliers, not private so i have not met mr s yet and to be honest i think ive been all forgotten about, i tried to call and find out more but no ans and left messages that got no response. i gave up, saw my gp yesterday to say to wait till the week 8 scan and then i have to contact some one if all ok as when i spoke to tell them im pregnant they said they would start lowering my dose around then and i dont want to do anything without confirmation.
that for advice regarding cyclogest, im pretty backward - never used a tampon in my life so i think im doing this right, it went in a bit better today, still not the same as before. can i use a lubercant? and im in bed now waiting for it to dissolve, what my life involves now : )

The reason I wouldn't get the hysteroscopy on the NHS is because my GP wouldn't believe me when I told him I thought I had scarring so I ended up having to get investigated privately. I could go back to my GP now and ask him to refer me but god knows how long that would take and being 42 with an AMH level low enough to cause me some concern already I wouldn't like to be wasting too much more time. I am going to write a very grumpy letter to my GP but I don't know if he'd be able to get me an appointment any sooner than if he'd made a normal referral now.

forgot to ask how you are feeling ? have you gone for your trip ? i told my hubby if everything doesnt go according to plan im booking a trip home to sydney oz when im made redundant in april, i need a break and need to see my family.

havingkittens, some gps are crap. a friend of mine at wrk has had 6 miscarriages over 5 years and never been pregnant, shes 40 this year and he didn want to refer her to the miscarriage clinic, told her nothing is wrong , just keep trying . she insisted but hes taking his time , i told her to call and follow up and he only just didn it even though she saw him over a mth ago

Bloody Hell Kittens. I bet furious doesn't even come close. I feel mad on your behalf.

Welcome to Mercator. Excellent news too!

Sorry not to name check anyone else but I'm crawling off to bed in a mo. Hope everyone's OK.

OMG the stories on here are unbelievable. RE: the miscarriage charter, I feel like making up a banner and marching throught the streets!!! It's disgusting the way you kittens and pico's friend and others are treated. Like someone said yesterday it would cost them less to just friggin investigate m/c rather than offer ivf on nhs which costs thousands.

Emailed L back at NLC and said can I just carry on with pred this month and not super ov. No reply yet. Others have been allowed with not much different hcg count from mine. Like you said digi I was only preg for couple of days. I can understand maybe not undertaking S ov this month cos of critical timings etc and af being out a bit but it's not like i was 8 weeks or something. digi can you actually get put though to Dr S?? Or would cheryl just refer you to L again?

I was happy before this investigation and I spose just buried it all away , able to deal with it and get on with my life. Now it's all consuming and feel like on a rollercoater and can't get off. alot of you are stronger than me (and I consider myself pretty tough). Dont really know how long i can do this.

Welcome merc well done ssshhhh.

Coley you are going great guns!

kittens That is crap. I am really angry for you. I was referred by my gp for a hysteroscopy last year on the nhs, and he was fab. It makes me crazy how it is very much a lottery of which gp you get. Did the Dr say how much scarring there is? Whilst I was waiting for my hysteroscopy last year I emailed Dr Lower (ashermans specialist) and asked for his advice. He will look at scan reports for you etc too. You may have heard of a mn lady called mummy abroad. She was treated by Dr Lower and now has a lovely little boy. He is the expert in his field and I would really want him if possible. Have you looked at the ashermans society? I joined them last year for info and they were great. I hope you get things sorted xx

Waves to all xx

Kittens that is utterly shit. How bloody frustrating for you. I have read about Asherman?s before, I remember there was someone on the Recurrent Buns thread who discovered she had had it and had some treatment. I am pretty sure she has now had a baby. But it?s the last thing you need to add to your concerns. I would second what Duggs has said about trying to pursue the NHS route if possible.

Mercator welcome to the thread! And congratulations on the BFP. We are allowed to say and accept congratulations here I think as we all identify with the worry that we might not stay pregnant so we are not saying hey congratulations ? you?re going to have a baby! As people might be saying in the real world. But we are saying congratulations you are probably going to have a baby but we know you are going to go through a lot of worry, drugs and scans along the way there. Stick around, we will add you to the list.

Pico ? you have really never used a tampon? I have used them less this year than any time (all that miscarrying) but they are so useful! I think I?ve used them since I was about 13! Swimming, dancing, running about.. you can be so much more confident. I think am also going to try a mooncup at some point too, for various reasons, but towels are a PITA. It was also you who couldn?t face the dildo-cam (for want of a better word?) wasn?t it? Just try to relax with the Cyclogest. Remember, brutally, a penis and a baby are a lot larger than the pessary and our bits are designed to expand. I wouldn?t imagine you would need a lubricant for the cyclogest. If they get slightly warm they can be harder to put in as they are less stiff, IYKWIM. Just push it on the end of your finger ? like with tampons it will slot into a space further up and you won?t feel it at all. If you feel around with your finger you will find there is a space there! My advice though would definitely do it last thing at night so it has over night to dissolve rather than you having to have a lie down in the middle of the evening.

My MN name is pretty self explanatory really when you know my lifestyle! I find the nickname Free actually feels like it suits me (I mean suits who I am) though too.

Hello to all. I am coming back to London tomorrow and hope to stop off at Oxford St to see if a certain shop or two (Duggs!) have any nice maternity things. I can really ill-afford to buy clothes but I am running out of things to wear so at least need a couple of bits.

That was it Battery, MummyAbroad. It's funny I remember reading her posts when she was going through checks and I can't believe she had her baby so quickly! Back to what we were saying about other people's pregnancies flying by.

free I went shopping today and nearly wept with how much weight I am putting on. I saw my accupuncturist tonight who reassured me that as long as baby is ok, then the rest can be sorted later. She also said I had a nice 'shell' :) Which apparantly means I look healthy. Just fat. (she didn't say that bit - I inserted it in my own insane mind)

kittens I'm absolutely livid for you. I'd be writing letters to whoever I could think of, if only for a bit of catharsis.

The treatment of women with mc/infertility issues is frankly appalling sometimes. It feels like its not just the physical fact of you being forced to have an ERPC because they cocked up a termination that gets ignored, but there isn't any consideration of the psychological strain of yet another op, the months of fighting to find out what's wrong, the lack of information and support.. All you needed at the moment I'm sure. I am so angry for you. Big hugs xx

And MN have gone very quiet on the mc charter... free have you got any news/insight on it? I suppose the difficulty is getting women to come out and talk about it. I wouldn't want the world knowing my difficulties, not til I can be a success story anyway.

Sorry, v ranty post... And breathe...!

Anyway: any other takers for Saturday?? I keep mentioning it as the thread moves so quickly people might miss it.

kittens I would be fucking furious too! I'm so upset for you that no-one took your Asherman's suspicion seriously. Having had various erpc procedures plus light periods are massive pointers. I remember seeing a gynae after my third miscarriage and they asked whether any of my miscarriages had been surgically removed and then explained that if they had then they would consider scarring as a potential cause for miscarriage. I'm actually surprised that this wasn't picked up by Mr S's team at St Heliers .
I know it seems like throwing good money after bad but I would definitely recommend batterys suggestion of getting in touch with Dr Lower. He removed the scar tissue from mummyabroad then I think she had to have some sort of follow up treatment, plus scans at certain points in her cycle to check her lining was building up ok. But she got her bfp within 2 cycles of trying and now has a little boy.

Welcome back and congrats mercator!!!

I can't help wondering, if the consultant thinks that the termination was the cause for the scarring, whether the subsequent 3 miscarriages were partly caused by this rather than NK cells. They did scan me during my RMC tests mid cycle and they said my lining was thick enough. But then again, I was also told by my GP, and actually by the other consultant at Mr S's NHS clinic that my Day 21 tests indicated I had ovulated when Mr S told me to the contrary. I don't really know whether to believe anything the NHS have told me anymore! It adds insult to injury as the second termination I had on the NHS was one of the most traumatic things I've have ever been though. My hospital had taken it upon themselves to outsource terminations to Marie Stopes to help with their budget. It was degrading, humiliating and traumatic to say the very least! And now this? Marvellous

I have read that it's best to have it done with small scissors (ouch!), rather than laser but I think there are only a select couple of people that do this and god knows how long it will take for a referral. I just don't feel like I have much time left. My head is spinning a little. As if it wasn't spinning enough with all the other stuff I have on my mind. One of these days I think it will spin so hard it will just fly off!

kittens - Definitley try MR Lower - when I emailed him he said to book to see him right away. As you have already had one procedure - you can take the report along and he can look at it I imagine. He uses scissors too. There is a video on you-tube of interviews with him. It makes me mad that sometimes the NHS do things like this and leave you to sort it out yourself. x

battery have you been treated by Mr Lower? How much does he charge? Where is he? At Princess Grace?

Also about to crash into bed but just wanted to say I'm so upset for you kittens. The speed with which drs dismiss ashermans syndrome or scarring is breathtaking. I had one Harley st ob/gyn practically laugh in my face when I tentatively suggested that it might be an issue (I've had 5 surgeries involving my uterus if you count the c-section). He is in his 50s, former head of obstetrics at a london hospital, and said he had never before seen ashermans syndrome. Mummyabroad knows her stuff- she is v helpful. And I am no expert but I did do a bit of research when I tested last year and I think your amh level is pretty good for your age.

Kittens so sorry to hear your bad news. I have heard about Ashermans syndrome which is why I have tried to opt for not having a D&C with 2 of my miscarriages. You are right that no-one really explains the risks involved and that it can cause problems in future pregnancies. I know that if you have health insurance and try to say that you need to have investigations due to period problems they will cover it - just dont mention that you are doing it for recurrent miscarriage as they wont pay for it. Ridiculous as neither of them are your own fault so it should be covered regardless!

I wondered if I had Ashermans just but Dr S said it was very unlikely. St Marys offered me a hysteroscopy on the NHS but there was around a 4 month waiting list to have it done. I was also told it could go wrong and could damage my womb so I decided not to have it done. I think unless the surgeon knows what he is doing it can make it worse - hence why you seem to have had lots a surgeries. I know there is a place in Athens that other ladies have spoken about which is supposed to be very good with Ashermans but again it is the cost factor. Have you considered egg donation as that might be an option? For me so long as I get the end result I dont care how I do it!